Hell on Earth

In March of this year, my doctor decided it was time to pull out the big guns and instructed me to take a very high dose of a medicine to treat my Lyme disease co-infection Babesia. She apologized profusely and warned me that such a high dose was going to be bad. That was the understatement of the year...

Several months later, I am only just now comfortable talking about what really happened when I took the medicine that--although I didn't know it at the time--would give me my life back. It was the most traumatic thing I've ever been through and I've never been more sure that I was going to die (obviously, I was wrong, thank goodness!). I had no way of knowing whether the medicine would help, or worse--do irreversible damage to my incredibly frail body.

Below is the post that I wrote a few days after my ordeal. I knew I needed to write it down in order to heal, but I never planned to let anyone see it. Now, here I am, five months later--publishing my rock bottom.

[When I woke up on Thursday (March 31st), I felt really great. That was the day that I was to start my new medicine. Mentally, I felt strong and optimistic--I was ready! So, I took my first pill and waited nervously. It kicked in after an hour or so and Herxed me right away, but it didn't last that long. I paused, regrouped, and decided to go for it--pill number two, down the hatch!

Pill number two was tougher--the Herxing was bad--and after that, the rest of the day just started to blur together in a clump of misery. It was a very tough day and my Lyme symptoms were having a heyday, but all in all I made it through four out of five of the pills that I was supposed to take. That was my breaking point--my body let me know in no uncertain terms that that was all it could handle. To this day, I honestly believe that five pills would have overdosed me.

I took my last pill (the fourth one) on Thursday at 5 o'clock. Around an hour later, I was stricken by the strongest vertigo I've ever experienced. Around 11 P.M. on Thursday night, my dear exhausted body FINALLY collapsed into a fitful slumber. There is simply no way I can put into words the hell that my mind and body went through on Thursday. However, Thursday paled in comparison to Friday. Four hours after falling asleep, at 3 A.M., day two began.

I assumed that by the second day the dizziness would have worn off, but not so. In fact, it was worse. Any time I moved, I became so dizzy that I would dry heave. I couldn't even sit up, but as long as I laid completely still, the dizziness was, for lack of a better word, tolerable. Any time I had to go to the bathroom, I had to crawl. As I sat on the toilet, I had to hold the wall on one side and the sink on the other side to keep from falling because the room was spinning like it was being sucked up by a tornado.

As the sun started coming up on Friday morning, I was beginning to doubt everything. I was starting to believe that I was feeling sick because of probably nearly overdosing my scrawny body with such a strong drug. And that is when the MEGA Herxing started. If you've never seen a Herx before, it can be quite scary. Some are big, some are small. Some last a few minutes, some can drag on for weeks. I have had many Herxes before--of all different kinds, but nothing even remotely close to what I experienced yesterday.

My body was slammed with full-body jolts that left me terrified, shaking, and physically/mentally exhausted beyond comprehension. As soon as I relaxed, my body would start convulsing and jerking all over again. That was the first time I'd experienced that bad of a die-off reaction. I don't know how I made it through a whole day of that and the best way I can describe it is that it was hell on earth. I made it through with the help of a guardian angel of a friend who stayed by my side for two days.

I can write about the experience, but what I can't put into words is the agony that my body went through--especially the mental anguish the treatment caused my brain to endure. Being too weak to talk or sit up is truly terrifying. Lyme disease takes you so close to the brink of death. It dangles you off the edge of a cliff so you are literally staring death in the face. If you want to live, you will have to fight harder than anything you ever imagined possible. And if you don't want to live--too bad; quitting is not an option.]



I don't write this story for pity. I write for healing. I write for acknowledgement  Most of all, I write this story as a voice for others who are going through the hell of Lyme disease. If our stories are never told, then no one will know how badly we need a cure for this disease! But in order for that to happen, we have to make our voices heard, even though sometimes that means telling the stories that are the hardest to tell. I am one of the lucky ones--after my ordeal, I was able to function again and now, five months later, I am functioning at about 80% of what I used to before I got sick.

"Alone we can do so little; together we can do so much!" ~Helen Keller

(I've been struggling to hit the publish post button on this post for days. Here I go...Gulp!)

Random Absurdities

Today, I am going to reveal a random absurdity about myself: Now don't get too excited, because it's actually pretty dull, but, here goes: I have a huge phobia about starting new medicines. I become irrationally convinced that if I take a new medicine, I am going to have an allergic reaction and die. I suppose this is the part where I need to embarrassingly (but happily) mention that I've never had an allergic reaction to any medicine, whatsoever!

So, where does this bizarre phobia come from? Well, I have absolutely no clue since, like I said, I've never had anything even remotely close to a reaction from a medicine. But, it sure does make Lyme disease treatment difficult for me! I am constantly starting new medicines, and every single time I have to begin a new one, that old phobia rears its ugly head and I feel the need to call my friends and say farewell.

So, would you care to take a guess at what's happening today? Yep, I'm starting a new medicine. I know nothing about this medicine other than the fact that it's a very unnattractive brown color that my kids would likely dub "poopy brown." I prefer to keep myself in the dark about this medicine until I see once and for all that I haven't keeled over from that ugly ol' poopy brown pill!

When you have Lyme disease and you start a new medicine, it is supposed to make you feel bad and that's supposed to be a good thing, because it means the medicine is killing off the bad bugs and causing you to Herx. The problem with my phobia about taking a new medicine is that it puts me on hyper alert for every single twinge or twitch that goes on in my body that could signify a sign of an allergic reaction.

And the problem with that is that I've got the hiccups right now, which I'm pretty sure is my body's way of laughing at me. Damnit, hiccups, you're messing up my phobia! How am I supposed to be convinced that I'm dying if I'm hiccuping and laughing every 15 seconds! Bah! The nerve!

Massage Junkie

For several days now, my body has felt like it is coursing with poison. My limbs feel heavy and my body feels toxic. I get this feeling often. It's my body's way of letting me know that it needs more help with detoxing. I do spend a lot of time detoxing, but when I get that icky feeling, I know my body needs a little more help and it's time to schedule a massage ASAP.

(Click for photo credit)

My friend came over in the evening yesterday and gave me a massage. I cannot emphasize enough how crucial massage has been in helping my Lyme disease recovery. I truly would not be here without it. I have heard that many people with Lyme disease Herx from massages, because it releases toxins into the body. In my experience, if I get weekly massages, I do not Herx from them. If I spread it out farther than that, I do occasionally Herx, but not very often.

If I'm feeling bad, having a massage once a week really recharges my batteries. If I'm feeling great, twice a month seems to be perfect for keeping me going strong. There have been numerous times when massage has taken my pain from a ten to a zero, and for that I am forever grateful.

The physical and mental anguish of Lyme disease is a heavy--sometimes, unbearable--load for those of us with this disease, and to have something like massage that can temporarily relieve us of that burden feels like nothing short of a miracle. Massage therapy has given me my life back!